Leealison - Unreal that they are going to send him home! Is there a protective agency there? This is very harmful to him. How would he be able to use the bathroom? You need to contact someone at the hospitals executive office and let them know they are responsible if something happens under these conditions. This is unbelievable!

_________________Dianne C.

Sat Jul 11, 2009 10:26 pm

Dianne C.

Joined: Wed Oct 08, 2008 10:30 pmPosts: 976Location: Henderson, Nv.

MM- So sorry to hear of the DOs decline. This has been a difficult, sad journey for both of you. I know the past couple of months have been especially hard on you and I want you to know what a wonderful caregiver you are to the DO...we all admire you. You are so fortunate to have those services available. If you don't mind my asking is that paid for by medicare or private insurance? Is it a by state program? Would be a wonderful thing for all. Sometimes I wonder how we do it!
I fear we are not far behind you. My LO has had a downturn the past couple of weeks too. Incontinence, both ways, making messes everywhere, extremely argumentive, very aggressive to the point that I thought he might become violent day before yesterday, can hardly walk sometimes, appetite is dwindling, etc. Called the neurologist and he increased the Seroquel to help quiet down the aggressive behavior periods...then we will try increasing the Sinemet to offset the ridig teeny steps which cause him to fall...when he can walk...but that can also increase the hallucinations. He finally has agreed to try to use a walker part of the time..when he can figure out how to use it. I am using a transport chair a good part of the time. He no longer wants to go out anywhere...although early evening tonight he asked if I would drive us to the local frozen custard stand for a cone..which I did gladly. Then it was back to the mixed salad talk, not making sense. He is usually sleeping by nine so evenings are not quite so hard but he gets up from 3 to 6 times a night leaving me sleep deprived. I do understand what a blessing it is when their time is called...nobody should have to live like that and he is mortified in the alert times he has. Unfortunately I am still getting the brunt of all this...blame for everything. Dr. told him to be thankful he has such a good caregiver and to count his blessings.
The puppy ..Suzette..has been a blessing. She is adorable and smart. Will try to post a picture of her on Flicker tonight. The work training her is something I didn't need at this time but the joy she brings certainly does offset the work...and so far she is still quite small.
Will keep you and the DO in my thoughts and prayers. You are so right...it is what it is.

_________________Dianne C.

Sun Jul 12, 2009 12:24 am

LEEALISON

Joined: Thu Jan 31, 2008 11:47 amPosts: 88Location: England

The hospital will arrange transport i.e. ambulance, for my FIL on thursday and they have a key to let themselves in.

I have just rung the hospital to see how he is today and he is still unable to walk, but will transfer with help into a chair. Apart from that he is ok but anxious.

They are arranging the care package today. I feel so drained that my head hurts.

The bottom line is my FIL wants to go home and so they are letting him do so. I used to have some help from his neighbours, but they have told me that they do not want anything else to do with the situation. The woman who lives next door to him told me that he had been threatening to kill himself and that she doesnt want that on her conscience.

Sorry to keep moaning to you guys. xx

Mon Jul 13, 2009 4:47 am

irene selak

Joined: Sat Jan 03, 2009 2:59 pmPosts: 1978

MM,
Do take care of you too, there is so much about this disease that we can't control and sadly it just marches on. I hope the extra seroquel gives some help to the situation..

_________________Irene Selak

Mon Jul 13, 2009 11:11 pm

Joyce K

Joined: Fri May 11, 2007 12:54 pmPosts: 115

Dear MM,
So sorry to hear of your loved one getting worse. Please take care of yourself. We all know where you are and the feeling of not having a SELF any longer. Try to find a timeout anywhere to let yourself recharge. We are all here for you.
Joyce K

Tue Jul 14, 2009 1:31 pm

Dee

Joined: Sat Jan 31, 2009 7:21 pmPosts: 172Location: Ohio

mm: I'm thinking of you, too. I know how you feel about losing yourself. And your DO is lost to you as well.....that I know so well. I hope you find some respite from the situation & I hope there is someone you can talk to......just to vent. I'm seeing someone (social worker) as well & she's been very understanding. She's older so that helps. Anyway, it may be time for you to consider some options here. Did I understand that you've have hospice now? I hope so. They are wonderful people. Be well & know that so many here know where you are. Dee

Tue Jul 14, 2009 7:56 pm

heycon

Joined: Thu Feb 19, 2009 12:45 amPosts: 103Location: St.Paul

to Dianne C

Dianne,
So sorry to hear about your LO's decline. Everything you mentioned is also where we are in this journey. Cleaning the bathroom several times per day is not uncommon.
I'm glad he wanted a cone. Nice to know he is still in there somewhere! Hang in there.
Heycon

_________________In & out of stage 4.

Wed Jul 15, 2009 12:45 am

LEEALISON

Joined: Thu Jan 31, 2008 11:47 amPosts: 88Location: England

In answer to some questions, social services here in the UK, pay for my FIL's care package as my FIL has no savings and lives in a council house.

I visited my FIL in hospital the other day. He was ok with me at first, I took him some food, coca cola, chocolate etc, like I always do. Then he started to get aggressive with me, in fact I moved my chair away from him as I thought he was going to hit me. He complained I had bought him the wrong chocolate and told me I was doing everything wrong. LOL, which I am not. I explained to him that I knew he was getting fed up of being in the hospital but I am trying to help all I can.

He was agitated, and cross. Even though he was been eating in the hospital well, he has lost quite a lot of weight and he was freezing cold even though it was a warm day and he had a shirt and jumper on.

I feel terrible, I cant do anything to help him out of his situation, I dont think he realised he was in hospital as he asked me to take him into his back garden so I could cut his hair for him.

Without meaning to be unkind sometimes I pray to god to take him, just so then he can be free and not have to live like this anymore.

xx

Sun Jul 19, 2009 5:12 am

Dianne C.

Joined: Wed Oct 08, 2008 10:30 pmPosts: 976Location: Henderson, Nv.

Know just what you mean. What a terrible way to have to live our final years.

_________________Dianne C.

Mon Jul 20, 2009 12:49 am

LEEALISON

Joined: Thu Jan 31, 2008 11:47 amPosts: 88Location: England

Hi all, Im am writing to give you an update on my FIL. Last week they sent him home, social services had provided a hospital bed and this was placed with his commode in the living room. He lasted 2 days and was then sent back to hospital. His carers found him on the floor on saturday morning, crying and confused and he was taken to hospital. As far as I know, (as communication with relevant departments is frustrating as there is always someone new on the case), the social services are now looking into finding him a residential care home to move to. The care agency have said enough is enough and will not accept my FIL on their books as living at home is not fair on him.

Im pleased with the outcome, he will have such a better environment to live in, and at least will be looked after how he deserves to be.

Has anyone got any advice regarding the initial move to a care home. I dont anticipate it will be a straightforward move and am expecting a few problems with my FIL, as he really wont be happy to go. (Even though he did actually say he would to social services, as long as he had a choice in where he was placed).

My FIL's sister had dementia (not lewy, cant think of the name of it, but it is when you have mini strokes in your brain). She died in the care home only 8 months after being admitted and at the same age that my FIL is now. I know everyone is different, but I cant stop thinking that he wont last long in there and its making me feel quite upset.

Thanks for listening guys. Lee-Alison x

Thu Aug 06, 2009 2:29 am

sythompson

Joined: Fri Feb 29, 2008 7:02 amPosts: 537Location: MI

I'm glad your FIL is finally getting the care he needs-what a relief!
The only ideas I have about the move is to have things he likes or that are familar waiting for him. Both my Grandmother and a friend (not dementia-but elderly and confused) like familar pictures on the wall, comfortable , favorite clothes, photos, their own pillows and comforter, favorite chair things that came from home and made the room more homelike and less institutional. The family friend(male) used to go squirrel hunting so we found some stuffed and carved squirrels and they stayed, he, loves flowers so we sometimes take him a fresh bouquet. He will be confused and not real happy (same with non-dementia) -also I found it helpful to listen and be sympathtic-yes its hard to be here and not home but the doctor says you have to be, or I know you miss home etc. -put the blame on the doctor -anyone but you. He'll need to feel he has a friend, offer to bring him something he misses. My Grandmother missed certain foods so I'd sneak them into her- at the end all she wanted was lemon ice cream-took me hours to find it.
Take care
Sharon

_________________syt

Thu Aug 06, 2009 7:40 am

irene selak

Joined: Sat Jan 03, 2009 2:59 pmPosts: 1978

Lee,
So good to hear they are finally looking for a home for your FIL, what wasn't fair was sending him home in the condition he is in and it is sad that yet again he was found on the floor.
There are things you can add for his comfort such as things he is familiar with and as to him not wanting to be there kind put the ball in his park and let him know if he gets better things could change, I sometimes thing that is the best way to approach many things with people who really don't really understand what their needs are!
Good Luck with all of this!

Lee-Alison,
Sharon has the right word -- relief. Thank goodness someone came to their senses. Why didn't the care agency reject him before?? Hope the move goes well,
Robin

Thu Aug 06, 2009 8:55 am

Dianne C.

Joined: Wed Oct 08, 2008 10:30 pmPosts: 976Location: Henderson, Nv.

Lee-Alison- So glad to hear they are finally coming to their senses and realizing he could be of danger to himself. You must be so relieved. It never ceases to amaze me how ignorant of this disease so many in the health care field are. Hang in there.

_________________Dianne C.

Fri Aug 07, 2009 2:03 am

LEEALISON

Joined: Thu Jan 31, 2008 11:47 amPosts: 88Location: England

What a nightmare. Since my last post, my family have been so stressed out and frustrated.

My FIL, was convinced by the social workers at the hospital to be placed into some type of residential home, he was saying yes, but on the day of discharge from the hospital, they said to him that today was the day and he would be going into the care home. He went ballistic, shouting and screaming, Im not going, I want to go home etc etc. The next thing that happens, the hospital ring us to tell us that my FIL will no longer go and that they are arranging for him to go home under a new care agency as the old care agency wouldnt accept him back on their books.

I told the social worker this is driving me nuts, she told me that as he is aware what is going on (dementia not bad enough), that he is allowed to make the ultimate decision, and so he has done and is allowed home). The trouble is he is so physically disabled that living on his own is just a joke and he does have dementia, he wouldnt be able to remember when to take his meds, or how to tell the time on a clock etc. But not to the extreme where he wouldnt be able to recoginise me.

Well, yesterday he was delivered home to yet again a cleaned house and restocked fridge/fridge freezer (done by myself), he got home at 10.30am and by 2.30pm, the new care agency ring me to tell me that he has been sent back to hospital (they were told that he could bear weight on his legs and walk with frame, where in actual fact he need 2 people to raise from his armchair and then when encouraged to stand up, then fell straight back into the chair). He could not do anything.

Last week I said to the social worker, what if my FIL comes home, lasts 2 days at home and then goes back to hospital, what happens then, she told me that they would keep him for a while and if he wanted to he would then be sent home. Its all down to the mental capacity, he really isnt bad enough mentally to be sectioned or anything so the choice of what happens to him is down to him.

I dont know how much of all this I can take, my own family is suffering because of the constant phone calls and problems that carers/hospital staff are experiencing. I feel like telling the hospital tomorrow, that I will no longer support my FIL at home (i.e. do cleaning, shopping, sorting his mail etc), in desperation for them to make him go into a residential care facility where he will be looked after, how he needs to be.

You cannot post new topics in this forumYou cannot reply to topics in this forumYou cannot edit your posts in this forumYou cannot delete your posts in this forumYou cannot post attachments in this forum